My son Cade is a survivor.
Eleven years ago this week, Rebekah and I celebrated the birth of our first-born. Despite his Down syndrome diagnosis, we were overjoyed to welcome this new life into our family.
But not everyone welcomes children like Cade.
It's no secret. People with Down syndrome have been targeted for extinction. In November, the New York Post heralded "The End of Down Syndrome" and profiled a new, safer test for pre-natal detection. Before this test was available, 92 percent of Down syndrome diagnoses (and many times false diagnoses) resulted in the mothers choosing to terminate their pregnancies. With these new tests, some experts foretell the end of Downs.
Why the rush to rid the world of people like Cade?
Certainly, it isn't because his disability physically threatens anyone. Rather, Down syndrome children pose a different kind of threat to society -- the in-your-face reminder that our aspirations for "perfection" may be flawed. People like Cade disrupt normal. Whether it's his insistence that everyone he says "hello" to on the busy streets of Manhattan respond in-kind or his unfiltered ability to hug a lonely, wheelchair-bound, homeless man without hesitation: people like Cade bring new dimension to what normal ought to be.
I've been encouraged to see several pop-culture venues putting on display just how normal children like Cade -- and the surviving 8 percent -- really are.
I was surprised and delighted when I opened a Nordstrom catalog a few months back and saw a young boy with Down syndrome posing as a model for children's clothes. No mention or special attribution was made of it. But there he was, hanging with a few other boys, included as one of the gang. The way things ought to be.
Then again, last month, dozens of major news outlets picked up this story line when the same young model was included in the latest Target ad campaign. One father and advocate, Rick Smith, took the story viral when he posted "5 Things Target Said Without Saying Anything" on his blog.
Only two weeks ago on the popular show "Glee," a16-year-old girl with Down syndrome was portrayed beautifully. Her character showed life as a high school teenager, a member of the cheerleading squad dealing with the pressures of modern teen life. During the episode, you could hear her internal thoughts playing out as the writers took a bold step forward in portraying how it might feel to walk in her shoes.
But these public displays of inclusion are only part of how we counter the extinction of those with Down syndrome.
Why do the majority of expectant parents determine not to carry these pregnancies to full term?
Fear of the unknown.
Fear that life will never look the same.
Fear that they won't have what it takes day to day.
Fear that they themselves, won't be accepted.
We -- as humans -- feel ill equipped to handle life-altering uncertainty. If we could see the future, we'd do everything we could to keep things safe. Yet it also seems that when we can control the future, we don't do well. In the case of prenatal diagnosis, when we catch a glimpse of the predicted future, nine out of 10 times we choose not to permit the adventure of life with a Down syndrome child! We buy into the utopian lie that we know what's best for ourselves and for this world.
This is where community comes in. Mothers, fathers, family members and friends need each other to come alongside and encourage that the Creator has a full intention for this life. To use this story to challenge our understanding of what it truly means to be human. To dispel our temptation to control, preserve order and protect a superficial version of what a perfect family must be.
When our second and third children were en utero, Rebekah and I were highly encouraged to do prenatal screenings; but we politely declined. While we knew we had the highest odds of repeating a Down syndrome birth, it made no difference to us. A life was a life. On our worst days, we focused on the fear of the unknown. On our best days, we focused on trusting God to give us the strength to parent whomever's life we were about to be given the privilege of stewarding.
So, why should you care about a Down syndrome diagnoses? This isn't just about Down syndrome. It's about our understanding of the common good.
The historic definition of the "common good" is the most good for all people. But today this definition has a competitor called the "public interest." In this presupposed progressive view, the most good for the most people is all that matters. Only one word changed but the implications are enormous. A commitment to the common good demands we value the elderly, the disabled, the unborn and those unlike us. It's an old, rooted conception being lost on a generation consumed with progress.
We must allow life in our world that doesn't follow our scripted narrative.
We must have the courage to choose that which is good over what is convenient.
Our fellow citizens have fought hard to encourage and protect diversity and acceptance in our society. We wear political correctness as a badge of honor; but the rising statistics of pregnancies terminated after a Down syndrome diagnosis reveal the hypocrisy of our celebration. We see equality as sameness and diversity in shades of color. We embrace differences when they fall within our market-driven, politically correct framework but rarely when they disrupt our status quo. When a fetus is diagnosed with Down syndrome and the mother chooses not to carry the child to term, more is lost than her future inconvenience and fear. The world loses another soul in its greater body.
What would you do if you were faced with this challenge? If you had an unplanned pregnancy over the age of 35 and a prenatal test showed that your child might be a candidate for Downs, how would you and your spouse face this decision? Would you be open to a new kind of perfection? One that disrupts your current life, but that could bring a deeper meaning you'd never imagined. All this because you walked with courage into the unknown.
Cade's life, and those like his, offers an alternative view of the good life.
These individuals alter career paths and require families to work together.
They invite each of us to engage, instead of simply walking by.
They love unconditionally, asking little in return beyond a simple acknowledgement.
They celebrate the little things in life, and displace the stress that bogs most of us down.
They seem to understand what true life is about, more than many of us.
They offer us the opportunity to truly value all people as created equal.
Happy Birthday Cade! I'm so grateful that God let us be your parents. You've changed us in ways we would have never changed ourselves. You've given us permission to measure loving kindness over productivity. You've offered us a glimpse of God's grace while shattering our preconceived ideas of what is most important. We love you!
Rick Smith started the blog Noah's Dad when his son was born and diagnosed with Down syndrome. Furious over the immediate prescription of anti-depressants for his wife and the lack of credible information about what this diagnosis meant, Rick started video-blogging about every day life with his son. The Smiths want to give others a realistic glimpse into their world and relieve fear and share hope for those who may have a similar prognosis staring them down.
Justin and Stephanie Meredith run Lettercase. I had the privilege of working with them to create a booklet for parents and medical professionals called "Understanding a Down Syndrome Diagnosis." This beautiful book puts children with Down syndrome of all ages on display enjoying life with their family and friends and contributing to the good of their communities. Thousands of these books have been placed in the hands of parents desperate to know more about what their future holds when given a prenatal diagnosis.
With the #Metoo movement in full swing and the 1st Anniversary of the Women’s March looming, it’s shocking to see Netflix promoting its newest stand-up show aptly called “Disgraceful.” Netflix promotes the show by claiming its comedian “…gives voice to the sordid thoughts you’d never say out loud, with blunt musings on porn, parking lot power struggles, parenthood and more.”
Apparently sordid thoughts about the disabled and people with Down syndrome are fair game. In fact, the show’s anti-disability sketch was deemed so funny by Netflix that it is used in their trailer.
At the Global Down Syndrome Foundation we are grateful for the freedoms we have in the US – including freedom of speech. AND YET, we also believe there are words that we are free to use, but as a society choose not to use because they are so directly tied to violence against a vulnerable population. I would argue the ‘R’ word is exactly such a word – witness Willowbrook, NY to Pueblo, CO today. The best essay I have read on this subject is written by our board member and renowned actor, John. C. McGinley (after you read it you will have a “Captain My Captain” moment).
Sometimes it is hard to advocate. I’m a working mom, I’m perpetually tired so I get it. But we can all take a moment to post, like, share, or petition. And WHY NOT demand Netflix to:
- Edit out the anti-disability and anti-Down syndrome rhetoric in the show?
- Immediately take the appalling sketch out of their trailer?
- Issue an apology for failing to use humanity as the demarcation line for comedic depravity?
What we are asking for is NOT too much or too difficult. There are lots of depraved topics that are funny (disclosure – I’m half NJ Italian) that don’t lend themselves to violence or oppression. So, you can still get that cheap laugh and feel good about yourself.
It’s time to call folks out. Seriously, we have nothing to lose.
Michelle Sie Whitten, President and CEO, Global Down Syndrome Foundation
Read John C. McGinley’s essay, Spread the Word to End the Word
Read full article on The Mighty